Understanding Kidney Disease Trajectory

In a recent article published in the American Journal of Kidney Diseases,Schell and colleagues identify 6 themes that describe how the kidney disease trajectory is discussed by physicians and understood by elderly patients with advanced chronic kidney disease. Corresponding author Dr. Jane Schell (JS) from Duke University, Durham, NC, spoke with Dr. Matthew A. Sparks (eAJKD), eAJKD advisory board member, about her findings.

eAJKD:Why did you initiate this study?

JS: I have always been interested in the care of geriatric patients with kidney disease. As a nephrology fellow, I was impressed by what I perceived to be a gap in these patients’ understanding of their disease and what the future may hold. I became interested in understanding how patients with kidney disease perceive what their disease course will be. In addition, I wanted to explore the role of communication between nephrologists and patients in understanding disease trajectory. There had been little research on how these discussions occur before the initiation of this study. Therefore, we intended this study to be hypothesis generating and descriptive in hopes of fueling future studies in nephrologist-patient communication.

eAJKD:What was known about this topic before this study?

JS: Studies have demonstrated poor outcomes for elderly patients after initiating dialysis, especially those with advanced comorbidities. These outcomes include functional impairments, increased psychological needs, and lack of advance care planning. Less has been studied regarding communication between nephrologists and patients, specifically its role in enhancing decision-making and patient experience. Studies in other chronic illnesses, such as heart failure and advanced lung disease, have explored physician-patient communication and its role in enhancing knowledge, improving experience, and impacting goals of care planning. These studies have fueled my own research interest and direction.

eAJKD:What can the nephrology community learn about patient communication from other chronic diseases, such as heart failure or cancer?

JS: The nephrology community can learn a great deal from research done on other chronic illnesses. Like other chronic illnesses, nephrologists encounter similar challenges in helping patients understand their prognosis and disease trajectory. While there are many similarities, the kidney disease trajectory is a unique one. Our challenge will be applying other communication models to our care for patients with kidney disease.

eAJKD:Were you surprised at any of the themes that you elicited from either patients or physicians?

JS: I was surprised by the similarities between the themes elicited by both the patients and the nephrologists. Uncertainty was a major barrier for having effective communication for both the patients and the nephrologists. Not being certain of patient’s disease course served as a major barrier to having discussions about what the future might hold. For patients, they seemed to deal with uncertainty through avoidance and focusing on the present. I had underestimated the power of uncertainty, and how it could impact decision-making and preparation.

eAJKD:What is the take home message of your paper?

JS: Communication plays an important role in how patients will ultimately understand, experience, and prepare for their disease course. By improving how we communicate with patients, nephrologists have the opportunity to impact patient understanding and decision-making, and hopefully this will translate into improved clinical outcomes.

eAJKD:What are some measures physicians can take to improve upon their communication skills with patients?

JS: The first and easiest way is to notice how you communicate with your own patients. The tool box within the paper also provides helpful skills in assessing understanding, addressing emotion, and most importantly dealing with uncertainty. Finally, like any new skill, it takes practice and constructive feedback. We have developed a communication workshop for nephrology fellows called NephroTalk. It is a 4-hour workshop which includes didactics and practice opportunities with simulated patients.